New Diagnosed and scared of the future

Back in late fall I entered a study for GERD, and after the first blood work came back the gastro doc immediately told me he was worried about my bloodwork. Some elevated liver enzymes and low platelet count. He encouraged me then to see a hepatologist. I thought this could be related to having had porphyria cutanea tarde back in the early 90's. The treatment back then was to bleed you on a weekly basis to make you enimic, and let your body use up the excess iron. I just thought that it had to be related to maybe an iron build up in my system and would have to be bled again, but agreed after the new year to talk to my health care provider about seeing a hepatologist.

About 2 weeks ago, I applied for a study to stop smoking at NIDA, who incidentally did extensive blood work and urinalysis plus tests for all transmitable diseases. Imagine my surprise during the routine exam from the physicians assistant when she said they suspected I had Hep C. I thought this rediculous, and of course it had to be related to the porphyria years earlier, but they called me this past Monday and said I was positive for Hep C. You could have knocked me over with a feather. First I went thru trying to figure out where and when I could have contracted it, and I have never been an IV drug user, by the end of a few days I got beyond that and decided it really doesn't matter how I contracted it, it is there and is something I need to deal with. I am also a very, very healthy woman except for those liver enzymes and low platelet count. From what I understand about this test for Hep C, is that the first test was "low reactive" but confirmed by the RIBA test. The physicians assistant said that back years ago when I had the porphyria, I probably had it then and it manifested because of Hep C. She also said back then I could have even been tested for Hep C with the condition, but it would not have turned up now, they didn't have the test like the RIBA test. The scary part is how long I could have possibly had this disease and not known it, and how much damage is done now with liver enzymes slightly elevated, and according to the gastro doc, the platelet count being low was a big concern.

I am trying to get into see a health care provider to be able to get a referral to a hepatologist, and most of my family and friends have been very supportive about this, but I keep reading things like liver disease (is it reversable if you get treatment?) Liver cancer, and all the little nasty things I am reading about this. Luckily I am not a drinker, but had a half a glass of wine on Christmas day (before I knew about this) and a glass on Thanksgiving day, but that will not happen again. I consider myself a very health person, in the past year I purposely lost 101 lbs. and look and feel the best I have in years. Now all of this. I am very frightened, the more I keep reading up on Hep C on the internet, the more frightened I become.

I also want to mention that a year prior (Sept 2007) I tried for a medical study on Metforman and was denied because I was TOO HEALTHY! All blood work looked good then and this was from the National Institute on Aging. There are also other factors that are in my life like treating a second dog for cancer and using Valproic Acid, and a dog that passed away in July of last year was on phenobarbital for seizures, I wonder if this could have a bearing on my liver enzymes rising now. But then again, I guess that would not explain the platelets.

Everything else looks good, heart rate of a 20 year old, and great resting pulse rate of an athelete, and cholestral is low. I am scared that if this has gone undiagnosed for so long, that maybe I am not even a candidate for treatment.

In my profession I have met quite a few people now who have Hep C, and I see some very scary things with them. I am wondering if anyone ever goes thru treatment without nasty side affects? I try to be a positive person, but have to admit the thought of a liver biopsy leaves me cold!

Sorry this has gotten so long, but if anyone wants to hand me some advice it would be more than appreciated.

thanks,
LD

[Andiamo1]

Having HCV is not the end of the world;  I had it from the time I was 20 until last March.

The first thing you need to do is find a good hepatologist and get a PCR test that will tell you with certainty whether or not you have it.  If you do need a biopsy, it is not a big deal.  It is mostly just boring to lay in a bed for 4 hours while you feel fine and want to go for a walk.

The standard treatment today can be difficult, but not for everyone.  It is tolerable for most of us, so hopefully, your PCR will be negative.  If it isn't, there are new drugs about to come on the market that are much more effective and require a shorter course of treatment: 24 weeks instead of 48.

Best of luck to you.
Eric

[Isobella]

So many here also found out "by accident".  Either insurance physicals, or just having routine blood work that shows elevated enzymes. Most had no symptoms that we would have attrbuted right off the bat to HCV.

The first days of diagnosis involves alot of waiting....and stress.  You will soon find there are no hurries with hep.  That may be good - because it is an indication that this is truely a slow moving disease. But it is still unnerving.

Most important, like Eric says-is to get a good hepatologist.  Get the PCR and find out what your viral load is (if anything).  Some clear on their own, but will always show antibodies.  Then they can tell you your genotype.

If you do have it for sure, they may then order an ultrasound.  From there you will get a biopsy-which is considered the gold standard in determing grade and stage of liver damage.

For most, the biopsy is a non-event.  Anticlimatic.  The worry and stress before the biopsy.....well, all I can say is that we have all been there-done that. Before is the worst part.  The biopsy itself lasts about a minute, followed by hours of bed rest.  The information you get will help you determine which direction to head.

While waiting for all these results to come in....you will have plenty of time to read thru the forum, archives and expert forums.  There is so much good information here.  Ask questions.  Gather information.  That way by the time you get all your results, you will have an idea of what your options are.

It will work in your favor that you are healthy and in good shape.  I have always been really healthy and fit...but I have always used alcohol.

I'm in week 25 of a Vertex trial and so far have had minimal sides.  I am getting a little weary....but it is still doable and for me, certainly worth it.  I am a geno 1a, my starting vl was 919,000 and I was stage 1, grade 0. I believe I have had hepC for about 35 years.

If I had not gotten in a trial with a promising new drug, with my low numbers, I think I may have waited for the new drugs to hit the market.  My doctor told me last week that Telaprevir will be out in 2010.  There is also a new Phase 3 trial with a Roche drug starting this summer for tx naives.  So there are many options.  The more information you get....the better you will feel about all this.  

So, take a deep breath, do some reading, make some doc appts.....be prepared for the "hurry up and wait" aspect of this and if you have any questions, please ask.  We're not docs, but people that have been right where you are now willing to share our stories and practical advice.

So, Welcome to the Forum!!!!  I wish you the best with all this.  Please keep us posted.

Isobella

[medicmommy]

First of all ((((((((((((((HUGZ)))))))))))))))...Second, take a breath...Most people here haven't a clue how they got Hep C, -and it DOESN'T matter. Mine was from a stupid needle stick. That didn't make a difference when it came to deciding how I was going to deal with the Hep.
When I was first told (it was found in a pre-surgical workup) I actually argued with the Dr! I've lived a painfully boring and squeaky clean life! I always wore gloves when taking care of patients and didn't have a single tattoo!  After I was told, I thought my life was over. I cried for two weeks over my "loss"...The survivor part of me finally kicked in and i began to fight back. I read everything I could possibly get my hands on. Janis and Friends was an excellent source of info and support as well as some Hep C veterans in another Forum. (I found this crazy bunch a bit later!)
So, IF you do have a "viral load" (actual amount of the virus present in your system), don't panic. Anything under 400,000 is considered low. Keep in mind this number varies widely and is only reflective of how well your body is keeping it in check. It doesn't seem to have any relevance as to if you'll respond to treatment (aka txing) or not. You will then find out your Genotype (the strain and substrain) you have. Geno 2 and 3 tend to respond the most readily to treatment, Geno 1 is the stubborn one, requiring a longer treatment time. A liver biopsy is a skinny needle that goes through a numbed area and gets a few samples of the liver tissue. It is the only way I know that tells you truly what kind of condition your liver is in. This is important to know because if you are in the first stages of inflammation and scarring, you have the chance of completely repairing your liver if you kill the hep C. It is also important for future reference. You will know how much damage the Hep has done, and how fast it's progressing if you do choose to treat and don't respond to it...Good luck. I think the waiting for the appointments to come and the waiting for results were the worst part! Hang in there...~Melinda

[Trinity4]

I had PCT prior to starting treatment for Hepc. That is how I found out I have HCV.  I had 3 months of phlebotomy's and yes, I became anemic as well.  It's a shame they didn't test you back in the 90's because PCT is a direct result of having hepc.  At least you know you've had had hepc since that time.  You really need to get a liver biopsy because PCT can accelerate damage to the liver and you already have HCV so the combination is not good even if you are symptom free and it doesn't HURT.  The thought of a biopsy is worse than the procedure.  Trust me on this one!  Of couse, you're always going to have those few that are terribly affected by any procedure, but for the most part, biopsy is painless.   Since I've been treating for HCV, my ferritin levels are normal and no blisters or sores or skin tearing which is associated with PCT.  PCT is chronic, is can be controlled but not cured.  My hepatolgist says treat the HCV and PCT will go away so we'll see.  
Good Luck and see a good hepatologist so you can get the answers you need and the course of action to take.
Trinity

[IAmTheWalrus]

I think many here can empathize with your "blown away by a feather" feeling.

HCV is a very serious problem but definitely NOT the end of the world. Eric, Elaine, Melinda, Isobella and Trin have covered things pretty well with their advice. It is good you found this place.

Your next step is to further assess more about the type and degree of disease you have. The most important being liver condition usually assessed by needle biopsy. Next you and your hepatologist will probably want to assess whether current treaments should be undertaken or not. You need more information (from genotype tests, biopsy, etc.) to make that decision.

The most important predictor of success with current treatments is viral genotype. The only reason to quickly decide for treatment would be if your liver has sustained a fair amount of damage and you and your doctor decide you should act now. Some with Geno 2 or 3 decide to treat before much damage sets in as  the treatment is usually shorter and much more likely to succeed than for geno 1.

Many people, if not most, do not have much disease progression until decades after they are infected. You may have plenty of time to wait for newer treatments. That is always the big question and one to be carefully made.

If you haven't found them already, there are a couple of sites that can provide a lot of written information. One that seems to be a favorite is:

http://www.janis7hepc.com/

Also there is information at: http://www.hcvadvocate.org/hepatitis/hepatitis_C.asp#1

Good luck!

Brent

[Looks4Path]

Hello, and thanks to all of you for your replies to my post.

Eric I needed to hear that having HepC is not the end of the world, I certainly had been feeling that way and thinking the end was near.I needed a positive note!

Elaine you mentioned "trials", but aren't some of those trials using placebo's as well as the real drugs? This would concern me if I wanted treatment and then found out I had really gotten none.Thanks for your best wishes, all the best to you as well.

Isobella, I am already finding out about the "hurry up and wait" end of this. It has taken me two weeks alone to get a general practitioner appointment just to get a referral for a hepatologist. I see the practitioner tomorrow. Am I correct in assuming that he will probably not have many answers for me? I say this because the gastro doc with the study even though a hematologist quickly referred me to a hepatologist. I am hoping I can find a hepatologist that specializes in HepC, or do they all specialize in this?

Melinda, I argued with the gastro doc and told him he was trying to make me sick woman which I am not! I totally expected that second blood work up to come back with everything perfect, and still did not believe it when it came back with elevated liver enzymes and low platelet count! I have since called his office, spoken to his wife/nurse and apologized for my reaction to him with this news. I have also asked for all copies of my bloodwork while in the study which she is in the process of sending me. I am hoping I have a couple of months history to take with me. The prior bloodwork I have from a year earlier was all in normal ranges. She was very supportive when I spoke to her on the phone about my current diagnosis and said if there was anything either her or her husband could do to certainly call them. I guess I had been thinking I would be treated like having the plague. Thanks for your explanation of the process from where I am at now.

Trinity, it was back in the early 90's that I had PCT. It was diagnosed by a dermatologist at the time, who considered it VERY rare and told me that there was a genetic thing involved, but drinking had brought it out. I am now reading where there is a direct relationship to PCT and HepC. I have not had symptoms since going thru phlebotomy so many years ago. I have also abstained mostly from alcohol as well. Also being light skinned and red hair I stay out of the sun for the most part. I am wondering about the "iron" build up in my system as this seemed to be a big part of the chain with PCT. It is amazing to me, even now, that when I mention PCT to any doctor they head for the medical books. The gastro doc I recently saw did the same thing, but did not mention to me anything about the hepc connection. You would have thought during all those years, and me mentioning during gyn routines, ect. that someone would have picked up on this!

Brent, thanks for your compassion and understanding my feelings at this time. You are also reassuring and I am sure you can relate to how I have been feeling so alone with this. I will be checking out the websites you have referred me to.

To all of you thanks again for your replies, I will be seeing a general practitioner tomorrow, armed with recent and a year ago's bloodwork and see what he says from there. Hopefully get that needed hepatologist referral. I am so glad I found this site, and I think all of you are helping me "calm down here". Guess I can put the Willmaker program away for a while anyway.

((((((Hugs to you all))))))) and thanks for welcoming me to this community!

LD

[Isobella]

Yes, hepatologists specialize in treating Hep C patients.  It would not hurt ask what % of their patients are hepc, tho.  You want someone who has alot of experience and stays on top of all the current research.  

To answer briefly about trials-they are all different.  Some offer better options than others.  There is one going on now with Telaprevir-a very promising new drug-that has no placebo arm.  Theres a Boceprevir one going on that allows rescue drugs that looks really good too.  Then there are some that are not so good.  You really have to do your research, evaluate risk/reward, and ask, ask, ask questions.

Let us know how the doc appt went.

Good luck =)

[FullOfHope77]

You have been given some wisdom from folks that have been around a long time and really know what they are talking about. I will not repeat them. You are likely still in shock and very 'left' brained about it right now. Anger, acceptance and surrender are just around the corner. But this group will help you.

I have, along with several in this forum, been treated with Telaprevir via study with great success. I treated before a few times and relapsed but this drug worked for me. I took it excessively due to the arm of the study I was in (I think) but pretty sure. Still did the 48 week regime and have been 'clear' (SVR) of the virus since the 2nd week of TX. As Eric mentioned this will likely be the first one to hit the street in another year or so... if you are not symptomatic and not in advanced stages of fibrosis/cirrhosis then you can likely wait and have a better experience of treating.

Hang in there and know 'that this too shall pass'...

Scott

[Looks4Path]

Isobella thanks for your continued support on this thread, it means so much to me right now.
I saw the general practioner on Weds. He is sort of a family friend and upon hearing my current situation worked me in as a new patient. Had not used him before because of insurance reasons, he did not take the insurance my husband and I then had, but the plan has changed this year. I was surprised this doctor actually knew what PCT was when I mentioned it to him. I told him in all the years I had mentioned prior to gyn's and other doctors, plus this last gastro doc it sent them all to the medical books looking it up! I cannot believe that in all this time, one of them would not have suspected HepC and ordered a test for it.He was surprised as well, actually not about gyn's, but said the gastro doc should have definitely known what it was.

He reviewed all the blood work I brought with me ranging from a year ago with no abnormalities to starting in October-January of this year where the enzyme levels/platelet counts are off now. He finds the case "fascinating/interesting", considering that in all these years the PCT is not back and no other doctor that has taken blood work has mentioned any abnormalities. He has ordered the following:

Hepatitis A screen
Iron panel
alpha fetal protein
quantative hepatitis C titer
Vitamin D panel
Ultra sound of upper abdominal

I forgot to mention when first posting that another abnormality had come back on the last blood work and that was a negative urine pregnancy test, but a BHCG 6. According to lab notes a 1-3 is negative, a 4-8 is indeterminate, and a 9 is positive. I had thought this should be of no concern but according to the physicians assistant that I spoke with she said this should be followed up by my gyn. She said it could also be a "tumor marker", but according to my general practitioner it could also be liver related. Hope he did not mean liver tumor cancer related. I am mentioning it here but should probably post it by itself and ask if anyone else has had this happen. Not likely that a 56 year old menopausal woman who has not had sex in the last year would be pregnant! Least the last time I checked you needed to have sex to be pregnant, who knows with modern science now and what's in our drinking water. (Just a joke!)

The GP says that if I get the testing done this week the results should be in next week and we will go from there and get me to a hepatologist. I plan on asking him to do the research and find one (since I can't seem to) that specializes in HepC.

Trinity I am wondering if you were advised to stay away from foods with high Iron content or supplements with Iron in them? I am wondering if my current passion for peanuts and peanut butter might be affecting those liver enzymes. Have you currently been prescribed any sort of diet to help get your PCT in check?

Scott congrat's on being "clear", that must give you tons of hope with this disease. I don't know if I am "angry", but I guess you could say that about how I feel towards a few doctors ineptitude. I liken it to the right arm not knowing what the left arm is doing with all the medicine specialites today. The thing I am most upset about is this seems all consuming to me right now, and makes it hard to get on with my life in other way's. (the thinking part anyway) and makes me so fearful of the future. Not a way to live for sure, but I am learning that I am not alone with this delimma and there are people who are have been where I am at and are handling this. I am not sure what the "surrender" part is about, as I want to fight back with this. When I first found out about my diagnosis, I instantly thought I would have to treat without question. Now after reading the boards I realize this is going to have to be a carefully weighed decision between my doctors and myself and the results of those preliminary tests. Yes I guess some of the things are sinking in now, but I still feel like a babe in the woods with much of this. Yes your part of "this too shall pass..." probably means that eventually I will settle down emotionally from this and the jittery sickening feeling I get in my stomach with constantly thinking about it will pass, at least I hope so.

thanks again guys for your advice, and all the best to you.

LD  

[medicmommy]

hiya!
On the iron subject...Supplemental iron is the concern...If you eat a good diet, you body will extract the iron it needs from your food. Iron overload is a big concern because the liver has to work pretty hard to assimilate it, and if your liver is already inflamed from the hep c, making it work harder isn't a good thing...
also, if you go onto treatment, and have to use rescue meds that increase your red blood cells, the extra iron can cause your spleen to rupture...Not a good thing either...~Melinda

[Mary4now]

Good luck LD, I too was freaking when I found out a year ago.  I have probably had it for 30 or more years, but I really dont know.  
Take care of yourself, follow all the wonderful advise gleaned by experience and keep us posted.  
xxxx m4now

[Looks4Path]

On the supplemental Iron thing, I was on a diet program that was meal replacement, and think I could have been weighted down with iron from that, thus the GP is doing an Iron Panel. He finds it amazing that I have not relapsed in all these years with PCT after having it and going thru Plebotomy to decrease the iron load back in the early 90's. I am thinking that maybe this last year with the big weight loss (101 lbs.) that being even smaller, there may be iron overload now, thus the liver enzymes shooting up and platelets lowering, since all blood work just prior to starting the program was all in normal ranges. I am also curious as to why he would want a "Vitamin D panel".

Let me see if I have some things right here after a bit of research of this site. With the results from the RIBA test, even though it was positive for 4 of the antibodies for Hep C that does not necessarily mean that the Hep C virus is active, just that you have contracted Hep C at some point in time? It is the PCR that establishes whether the virus is active or not??? Also would a Hep C titer be the same as a PCR? I am assuming that I will find out the virus is active since my the liver enzymes and platelet count are not normal.

Is it only the liver biopsy that establishes what time frame you got Hep C in? On researching this site I found several posts concerning Gamma globulin and Rhogam, and I had one shot of each after a pregnancy back in the 70's. The gamma globulin early in the 70's and the Rhogam in 1979, its' a ***** thinking that something that was suppose to help me could possibly be my source of infection and for all this time!

I am sitting on edge now waiting for the first test results to come back hopefully tomorrow, I know I will jump everytime the phone rings. I just wish I could get rid of this anxiety I am feeling over all of this. I guess the hard part right now is not knowing, and not knowing in what direction I am going in. Will post back when I find out those results.

Hugs to all,
LD  

[Mary4now]

Let us know about your results.  I dont think theres much that can determine when one actually contracted the virus.  The gamma globulin is a risk, I had one too in 71,  Its an unknown.  
The biopsy will tell you the extent of damage to your liver, they biopsy an area that is said to represent the whole liver and determine from that piece.
I wish you the best...... hang in,,,
try not to worry it doesn't do anything to help the situation.  (listen to me Ha! )
Mary4now.  
gnite

[nygirl7]

I'm sorry to hear your news.  I want you to try and understand something though, when people say it doesn't matter where or how you got it, it's true.  The important thing is you DID find out that you have it, that was a very LUCKY thing believe it or not. It will take you a while to wrap your head around that fact believe me we all know, but I've known three people who have died because of this disease and I realize that I was one of the lucky ones - finding out I had it for over 20 years I was already a stage 3 and I had to do treatment.  At least I did find out so I COULD before it was too too late. End stage liver disease is not a a pretty thing and has hard as treatment can be - it's a MUCH better option than that.

Follow the advice of people who have already been in your shoes and learn everything you can about this disease and it's treatment.  By doing so you give yourself much better chances of success should you decide to do treatment.  Treatment isn't the end of the world......always remember that it's a temporary thing but the success is forever.

Get a good hep doc, get your PCR and geno and find out where you stand. Then get your biopsy and see if you need to do treatment or if you can wait.  Just take it one step at a time and you'll make it through just fine.

Oh yeah........get a copy of all of your test results so that you can learn to read them - just post them in here and people will help you figure them out.  Always get a copy and put it in a folder - it will come in very helpful to you later on.

Good luck.